Each morning after changing my daughter Gianna’s diaper, I’d set her down on the floor and she’d take off to explore the world around her. But that all changed one morning when she was just 14 months old.

I set her on the floor as usual, but this time she fell down. I helped her up and again she instantly fell to the floor. I tried to hold her hand to coax her to walk, but she began crying and refused to stand. I carried her to the living room and began to examine her entire body. I had no idea what was wrong with her. I scheduled an appointment to see her pediatrician that afternoon.

The First Doctor Visit

As we were in the doctor’s waiting room, Gianna miraculously began walking! She was limping, but was walking nonetheless. After a thorough exam, the pediatrician suggested that since she had recently been sick, she could have “reactive arthritis” or possibly juvenile arthritis. He ordered X-rays from her hips to her toes to rule out any possible fractures.

A Battery of Tests

My daughter was only 14 months old and I couldn’t explain to her what was happening. All she knew was her mommy and two other women were holding her down on this cold, hard bed while some giant machine hung over her and made crazy noises. It was one of the hardest things I have had to do as a mother. It took about 30 minutes to take the X-rays, and Gianna was screaming the entire time.

The X-rays revealed nothing, so the pediatrician ordered blood work. The blood tests confirmed that Gianna had an extremely high level of inflammation in her body, but he still couldn’t find a diagnosis. The doctor suggested I film my daughter first thing in the morning so he could see exactly what was happening.

A Cellphone Video of a Baby in Pain

The next morning I began filming Gianna as she struggled to walk toward me. I had my cellphone in one hand and was reaching out to her with the other telling her, "It’s okay, baby, walk to mama.” She cried as she tried desperately to walk to me. I could tell she was frustrated that her legs wouldn’t do what she wanted them to do. I could also tell she was in pain. A mother knows the pain cry of her child.

With each step she took, tears began to well in my eyes and eventually I was crying. After about 30 seconds, I could no longer stand to see her struggle in pain, so I picked her up. I wasn’t pleased about what had just happened, but I had “proof” that something was wrong.

A Shocking Diagnosis

Based on the video, Gianna’s blood work, and what I was describing, she was diagnosed with juvenile arthritis. The pediatric rheumatologist told my husband and me that there was no known cause or cure for JA.

After we left the doctor’s office my husband asked if I wanted to get a bite to eat. That was the last thing I wanted to do. The first thing I wanted to do was cry. My 14-month-old baby has a chronic disease that will cause her pain and she may never be able to live a normal life. I was in shock. My husband was in denial.

'Caution: Chemotherapy Drug'

The following week my husband, daughter, and I went into the doctor’s office where the nurse would teach me how to administer methotrexate (Rheumatrex, Trexall) injections to Gianna. After my tutorial, I practiced preparing and administering the injection into a stuffed animal. It was a piece of cake!

Then it came time to prepare the actual medication that I would be injecting into my beautiful, innocent baby. I saw on the prescription label, “CAUTION: CHEMOTHERAPY DRUG — DISPOSE OF PROPERLY.” I totally lost it. I was no longer able to hold it together for the sake of my daughter and husband. The reality that I was about to inject a chemotherapy drug into my baby rocked me to my core. The gravity of the situation finally hit me.

Up until this point I had complete trust in the doctor. I actually felt like I had talked my husband into this treatment. He was clinging to the hope it was reactive arthritis and she would wake up one day miraculously cured. I sobbed on the shoulder of the nurse I had only just met.

After about a minute of crying, I sucked it up. The nurse held Gianna’s leg down while Gianna cried and struggled to get free. I took a deep breath, stuck the needle into her leg, pressed the plunger, and injected the drug into my child. It just about killed me, but as soon as it was over, I swept her into my arms.

Just One Dose of a New Drug

After two months on methotrexate (Rheumatrex, Trexall) and weekly physical therapy, I could see that Gianna had improved, but she was still having great difficulty walking. She could walk in the morning, but had a very pronounced limp. My husband said he only noticed Gianna limping on one leg and tried to convince me that it wasn't worth telling the doctor. He was still in denial.

Gianna’s arthritis had spread to both of her ankles as well as her knees. The doctor then added a biologic drug called etanercept (Enbrel). One week after Gianna’s first injection I sat drinking my morning coffee watching her play. Then it struck me. Something so normal that I almost missed it — Gianna was not limping at all. I hadn’t seen her limp for several days. The drug worked and after only one dose! It was a miracle!

Exactly one year after her diagnosis, our pediatric rheumatologist determined that Gianna was in medicated remission — meaning she displayed no joints with active arthritis. After she maintains medicated remission status for one year, we’ll try to wean her off of the medication and hope she remains in remission.

Gianna’s Bright Future

Even though Gianna is in medicated remission, I still worry about her every single day. I wonder if the medications I am giving her will impact her health in the future. Children have only recently begun to take these medications, so no one really knows the long-term effects on their developing bodies.

I wonder what will happen if her disease comes back later in her adolescence. She loves dancing. Will she be able to be a professional dancer if she wants to? All I can hope is that her disease will remain in remission, and that when she flares I’ll be able to help her manage the disease while still allowing her to live her fullest life.

Tina Chiappetta and her husband, Rocco, live with their daughter Gianna in Sacramento, Calif. Tina, who moved there from beautiful Sonoma County when she met her husband, is a stay-at-home mom; she says being a mom isn't a full-time job, it’s an all-time job. Tina is also on the board of the Arthritis National Research Foundation and is very active with the Arthritis Foundation as the regional Volunteer JA Parent Coordinator. She spends much of her free time advocating for the 300,000 U.S. children who have juvenile arthritis, and it is her mission to raise awareness and money to help find a cure for JA.

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